Wednesday, February 25, 2009

My "CF" Info

I have been reading so many amazing CF stories the last couple of days and lets be honest I have nothing but time right now so I thought I would tell you mine!
  • My name is Jennifer
  • I just turned 27 on Feb. 3rd
  • I was diagnosed at 2 months old for failure to thrive
  • When I was a baby my mom would mix my digestive enzymes in banana baby food before I could this day I can't stand the sight or smell of a banana! Eventually, I just learned at a VERY young age how to swallow a pill.
  • At around the age of 8 or 9 I started doing daily breathing treatments and my mom did my CPT.
  • When I was in 3rd grade I had a make a wish. My wish was to meet Michael E. Knight who plays Tad Martin on "All My Children." It was a WONDERFUL experience and he is an amazing man who I kept in touch with for years after. (This kind of puts my love for soaps into started at an early age!) :)
  • My first hospitalization wasn't until I was in middle school. Other than that I had a completely "normal" childhood. Once I hit high school my hospital stays became once a year.
  • Other than the occasional sinus headache/pressure I have never had any serious issues with my sinuses that require surgery or any maintenance on them (knock on wood)
  • When I was younger not only did I take horseback riding lessons but I also took voice lessons for years and was an opening act for a dance troop performing at many places around FL.
  • When I was 20, I had to have my appendix removed. Because the doctor was worried about putting me under I was awake for the whole thing and was given an epidural for the procedure. It was NOT fun.
  • In 1999 I was told I should start thinking about tx. Back then the list was based on seniority not need and since my blood type is O negative, the idea was for me to go early and get on the list so by the time I would need it I would have moved up the list.
  • In my early 20's I started going for my "tune-ups" about every 6 months. It was around this time I warmed up to the idea of a medi-port and when I was 21 I finally had one put in. Its not in the usual spot, mine is on my left side under wear my bra strap is. When I am not accessed you would never know its there....I wouldn't have it any other way!
  • I have my AA in Accounting an have worked at a bank for 5 1/2 yrs. I plan on going back to school once I am healthy again! Oh yeah....I also went to school for phlebotomy before I went to school for accounting. I LOVED it but soon realized that if I wanted to work post-tx being around sick people wasn't necessarily a good idea.
  • I was diagnosed with CFRD 2 years ago. When I am not in the hospital all I need is 1 shot of Lantus a day (a 24hr insulin.) When I am sick and in the hospital/on steroids I need novolog to cover my meals too.
  • It was also 2 years ago when I started sleeping with oxygen at home.
  • When I was 20 my mom lobbied to change the law in FL. Because of her hard work and determination Medicaid in FL now pays for adult double lung transplants. Before her they did every other organ BUT lungs....oh yeah and did I mention the law is named after me! :)
  • I have 2 little brothers and a little sister. Nobody in my family (to our knowledge) has had CF but me.
  • In June 2007 I married the BEST man in the world. It was an awesome day and it just keeps getting better. He always makes me laugh even when I am trying to be mad at him! :)
  • With my health not getting any better and my FEV1 declining I was once again sent to Shands at the University of Florida. I re-did all my tx test to get a score and in May 2008 I was "activated" on the list. Since then I have been working from home and twice a week attend pulmonary rehab classes to get prepared for surgery.
There is SO much more but my brain is hurting just trying to remember all the dates/facts! I have had such a great life I could be here ALL night writing about it, but don't worry I won't. I have a wonderful support group of family and friends and can't wait till I can add to this list all my great tx milestones. Goodnight!!


OceanDesert said...

Holy COW! An appendectomy w/ just an epideral!?! wow....

1999 AND O neg!!? That's so crazy..It's like we're 'cysters!' Ha!

You have a LAW named after you?? Neat-o! Your mom sounds like a pretty spectacular lady... Wonder why they would do every other organ EXCEPT lungs??? that's nuts..

You are going to just love your new lungs so much! .. can't wait for you to get that call.. If you work as hard as you've worked going to PR, etc.. you are just going to ROCK! :)

This was so interesting and fun.. thanks jen!

Hope u r sleeping nice n' sound 2nite!

OceanDesert said...

Oh, and forgot to say... NOW I know where your passion from soaps comes from!!

When I was young.. the hospital social worker had Luke Perry call me.. you know from 90210.. I watched the show ALL the time.. I was star-struck

Christy said...

Jen!! Thanks so much for sharing that!!! What an awesome person you are. Ditto on what Sara says about new lungs. It changes everything.. in a good way!!! :)

You and Piper have SO much in common.

OceanDesert said...

Jen, just checking to see how you're doing today and I'm thinking about you!


Heather said...

In May, 2002 Gov. Jeb Busch signed into law The Jennifer Knight Medicaid Lung Transplant Act. This law expanded coverage to adults who needed lung transplants. Previously to this law, FL Medicaid covered adults who needed heart, liver, kidney, bone marrow & cornea transplants, but not lung transplants. Keep in mind that FL Medicaid did cover children who needed lung transpants, but obviously our law makers needed someone to show them that we now have adults in this state living with CF. Believe me when I say that the state of Florida needs much more advocacy work done for the needs of our young adults who have CF.

Jackie said...

I really like this entry...things I knew or maybe didn't know. Your Mom is so great and loves you so much. That is so awesome she got that law passed and in your name!